Journeying through Alzheimer’s with my mother has given me a complete and unique view of this currently incurable disease of the brain. For the past ten years I have carefully watched the progression as my mother slowly disappears and becomes more physically fragile. I’ve been touched by this disease in a significant way as it steals every part of the woman who gave me life. I first became aware of Alzheimer’s two decades ago when it gripped my grandmother, my mother’s mother. Should I be scared? Am I next? The last months of nana’s life were ugly because she had not legally communicated her wishes. My mother persevered as her advocate but it took its toll on her.
I remember something my mother said to me during that time and can now grasp the full meaning. She told me that this is the most terrifying disease because it sneaks up on a person slowly. Mom said if she ever thought she had Alzheimer’s she would want to end her life before it robbed her of everything. She spoke of the indignities of losing oneself to the disease almost as if she had experienced the pain and embarrassment for her mother. Mom understood Alzheimer’s.
Mom did everything the medical experts recommended
As mom aged, she did what I considered all the right things. Though I never thought again about Alzheimer’s after my grandmother passed in 1999, I watched as my mother took care of herself through her own aging process. She was always diligent about nutrition to the point where she studied newsletters and medical research and cooked for herself every day. Mom had always been a nutrition “nut” as I don’t recall ever having a slice of white bread in my early life. It was whole grains all the way. In her senior years, she exercised regularly, riding her bike and gardening. All the power tools were hers. And she was always reading, doing crossword puzzles and figuring out something new on the computer. In hindsight, she did everything the medical experts recommend doing to ward off dementia.
I have wondered if my mother worried about herself after caring for my grandmother through Alzheimer’s. It seems a natural concern to tuck away in the subconscious. Perhaps her concern motivated all the self-care.
Is genetic testing for Alzheimer’s right for me?
As my mother likely did, I worry about being at a greater risk for developing Alzheimer’s disease. Researchers have located genes that are considered risk genes and those that are considered deterministic genes. A person can inherit a risk gene from one or both parents and be at greater risk of developing Alzheimer’s disease. Experts note, though, that inheriting these risk genes does not seal the fate of developing the disease. Some who carry the risk genes never develop the disease and some who develop the disease do not carry these genes.
Alternatively, those who carry the deterministic genes do, in fact, develop the disease. Scientists have only identified a few rare genes, however, that directly determine the development of Alzheimer’s. Genetic testing for Alzheimer’s currently seems to be an incomplete science and for that reason, would only rarely provide a true picture of an individual’s outcome related to the onset of the disease. For these reasons I’ve never considered genetic testing.
Scared. Am I next?
As my mother did, I try to do all the right things for myself as I age. I exercise, try to eat right, get good deep sleep regularly and continue to keep my brain stimulated. I try not to obsess but admittedly it is scary when I have a “senior moment” like suddenly not recognizing where I am in the car. Part of my self-awareness is monitoring for unusual developments or episodes of forgetfulness. To date, I don’t believe I’ve got anything to worry about. But as I watch my mother on a daily basis, the concern is always with me. I’ll be blunt. I’m scared of developing Alzheimer’s disease but nowhere near convinced I’m next.
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